kclynn

Hi kcmom!

I'm so sorry to hear your son is going through this. It's tough enough to deal with let alone feel like that. And you must feel terrible when he's going through it...I know we Mom's tend to take things so deeply when they involve our children. I dont really get angry but I do notice that in some of my episodes I get to a point that I will just start crying and it makes me feel so much better when it's over. It's like I need to release some extra stuff or something. Keep faith that you guys are doing a great job! What has he been dx with?

KC

KC, He has been diagnosed with POTS. I hear you about feeling better after crying.

I know blood sugar can cause anger issues as can dealing with the fact that you're losing so much of yourself. Though, I hope that your son is thoroughly tested for pheochromcytoma, which can also cause these type of episodes.

Good luck. Prayers abound.

Sara

Sara,

His Dr. did the urine test for a Pheo last November at my request. It was negative. I wanted the blood test but she said she looked into it an was advised it wasn't nessasary. He does not have high blood pressure.

I was surfing around and found this from a phamplet for college students by dynakids, and contributed to by Beverly Karabin, Dr. Grubb's PA. I think this actually describes his confusion episodes pretty closely an also mentions the possibilty of low blood sugar. I think it is possible all of these may be caused by the lack of oxygen to the brain and imbalance of the brains chemicals. I guess it is not a far stretch for the anger issues to be a result of this, also. Because the onset has been only recent with the worsening of his autonomic symptoms, rapid heart rate, balance problems, jerks, and other things related. I was looking to see if there were suggestions on anything that might help the situation. I do think the blood sugar is something to look into. I told him tonight if he starts acting like that again I was going to ask him to drink some juice or something else. Some of the laughter episodes happened when he was having other types of "seizure like" episodes so I don't think it is a mental illness issue at all. The anger could be made worse by this entire illness, though, as he was extremely active and his whole life is changed.

Students afflicted with dysautonomia conditions

may experience periods of hypoxia (low oxygen

levels) that can significantly reduce their cognitive

capabilities and cause periods of disabling ?brain

fog? and cognitive impairment.

Alterations in the dysautonomia student?s blood

flow and neurotransmitters (brain chemicals such

as serotonin, dopamine, and adrenaline), as well

as blood pressure and blood sugar all contribute

to the cognitive issues associated with these

conditions.

Brain fog is typically described as confusion and/or

a lack of mental clarity. It can feel like a heavy cloud

that reduces visibility or clarity of mind. It can

cause patients to experience episodic disorientation,

forgetfulness, and feelings of detachment from their

surroundings. In severe cases brain fog may even

manifest as temporary confusion regarding

surroundings and the inability to recall names.

The cognitive impairment that is associated with

dysautonomia conditions typically involves

difficulties with regard to memory, word finding

and word substitution, retrieving and recalling

information, multi tasking, problem-solving,

attention, and comprehension.

My son is having a lot of trouble with mood swings and episodes of a lot of anger. We are talking throwing things, or running up and down the hall or street till he collapses. I think there are a couple things at play here. He is angry about this happening to him and missing his life, school and friends. Also I wonder if he is having Adrenaline surges. He often looks at me and says he doesn't want to feel that way and doesn't know why. In addition he is also having extreme confusion, not knowing where he his or how he got someplace. Yesterday we drove up to Rochester (mostly at night) and I had to explain to him 3 times where we were and why, and inbetween he would be "ok". He was also having lots of loss of balance.

Anyway, was looking to see if any had suggestions that might help the adrenaline and anger surges. I try but always seem to do or say the wrong thing and make it worse, though I am not sure. I am fearful of him hurting himself objects (not that I care other than if he damaged something that will make HIM feel even worse).

We see Dr. tomorrow and Wednesday.

I will ask about the Tourettes. I think maybe it is not that, though. Does Tourettes cause the heart rate to flucuate up and down a lot? He also has a lot of confusion and the people in the few videos I saw just went on with what they were doing and he could never do that.

He does get severe shaking when he is exposed to cold, like being in a restaurant then going out to a cold car. He shakes severely and also makes some vocals like trying to get a breath so, perhaps it is related? We really hadn't thought of those together because the times he is exposed to cold you could see that there is a trigger and these others he is just sitting in the recliner, though they tend to happen when he stops an activity or his attention changes, like he is watching tv and then you talk to him. I also have noticed some of the jerks seem to happen when I touch him but there are many that are harder to say was anything triggered it.

Look up temporal lobe epilepsy, complex partial seizures and focal seizures on the internet. I have POTS and went to see a neurologist for memory issues. She did a regular EEG as well as a 72 hour ambulatory EEG which showed abnormal activity over my left temporal lobe. When I started taking anticonvulsants my POTS symptoms dramatically improved. While I have never had symptoms like you are describing, they sound a great deal like what I have read about with complex partial seizures. Hope you find an answer soon but please don't let doctors tell you that if your son was conscious during the episode, that he is not having seizures. While this is true with grand mal seizures, it is not true with partial/focal seizures. If you do not get the answers you want, please consider seeing an neurologist who specializes in seizures (an epileptologist).

I have looked at some of that but it is so confusing! When he has the sleep study they will have eeg monitors hooked up to him and since he never sleeps till midnight and these have been happening a lot in the evening (not always) maybe they will get some good information.

The video isn't what my son is experiencing. His are more of short bursts of energy but are now longer than they have been. Sometimes they are just isolated mild to significant jerks. Now they interfere with breathing and also last maybe 3 to 10 seconds but may be several in rapid succession. Now we have noticed he gets really confused and sometimes "loopy" with inapproriate laughter.

Has any neurologist explored tourette's syndrome? Laughter, itself, can be an involuntary response- but some kids mask their tics/movement with laughter. Tourett'es has some OCD elements and several of us here have noticed that our dysautonomiac kids have mild OCD elements. Just a thought...

Take Care-

Julie

The doctor when she saw some jerks did say tics but these episodes go way beyond what she saw. Last night he had another and alternated giggles with anger (because he knew he wasn't acting right and couldn't control it).

The video isn't what my son is experiencing. His are more of short bursts of energy but are now longer than they have been. Sometimes they are just isolated mild to significant jerks. Now they interfere with breathing and also last maybe 3 to 10 seconds but may be several in rapid succession. Now we have noticed he gets really confused and sometimes "loopy" with inapproriate laughter.

I finally tried a heating pad for my 14 year old son when his feet pain becomes severe. He refused to try it at first but once he tried the heating pad he admitted the heating pad really helps him. He said it helps his feet not throb and tingle as much. It might be worth trying.

My 15 yr old son also has A LOT of trouble with his feet. Everything from burning, tingling, pain. They turn blue, the rest of him can be burning hot but his feet feel like ice to me. I put a heating pad on them once and he howled in pain (like warming up frostbite too quickly, I think). Then next time I put a warm heating pad over his ankles (I think it warmed the blood circulating through his feet) and he said that helped, and even next to his feet under a blanket made them feel warmer.

Sometimes his feet hurt and tingle he "dances in discomfort" to the couch.

Be sure to take his Blood Pressure all during these events and also check his heart rate, you most likely will see very low BP readings!

DADofPotsSon

I will try. His muscles and skin get so sensitive he was getting really freaked when I was doing the automatic cuff. That is one reason I got the oximeter, to monitor his heart rate. In general his BP isn't too affected by the POTS unless he is having a sweating episode when the diastolic goes into the upper 30's low 40's. Those haven't happened in awhile (and I couldn't tell you why) Plus his arms are moving so much wouldn't that affect the results? It would be good to know as I think that would help determine whether it is pysiologic or something more stress related. (his primary when she saw just the tremors and jerks way back in November thought maybe his system is "overloaded" because of being sick so long.)

Does everyone else have changing symptoms?

His episodes continue today, though not as strong or long. Most are several seconds. Tried to take him to the neurologist he has seen here but he is out for the rest of the month and they have NO appts. They said the ER is always an option.

He had really strong ones last night and almost did take to ER. I have an oximeter and it said his oxygen was staying about 99 or 98. I did tape when it was happening so I now have 3 really good tapes to show. I called his Neurologist at Mayo and they had me send the videos to them this afternoon so I am waiting to hear from them. This is actually the best as he is thier patient and they know his history and they can look and see what is happening. Waiting by the phone...

They called, Dr. saw it and said to be sure not to miss any appts we have for next week. We are scheduled to be there on Tues and he was scheduled already for a sleep test so they would have an EEG going then.

His episodes continue today, though not as strong or long. Most are several seconds. Tried to take him to the neurologist he has seen here but he is out for the rest of the month and they have NO appts. They said the ER is always an option.

He had really strong ones last night and almost did take to ER. I have an oximeter and it said his oxygen was staying about 99 or 98. I did tape when it was happening so I now have 3 really good tapes to show. I called his Neurologist at Mayo and they had me send the videos to them this afternoon so I am waiting to hear from them. This is actually the best as he is thier patient and they know his history and they can look and see what is happening. Waiting by the phone...

Macks Mom: Yes he was conscious the whole time. He knew afterward that it had happened but I realized later when talking to him the memory was a bit fragmented.

Tablet and Friedbrain: I will try to tape it. I told him tonight I was going to have to tape it for the Dr. if it happened again. I just got another episode on tape of him having an episode of jerks. If I get some good episodes on tape then maybe they couldn't ignore it.

Have a friend who had four EEGs before she got a positive one. She was having Grand Mals.

Sugartwin: I have read a lot of people with Dysautonomia refer to having jerks so was thinking they maybe just went along with it. He actually had a couple jerks at the Neurologists office at Mayo and she said she thought they were just tics. They weren't like this though, more just a noticable jerk.

Nowwhat: The phone was close by and I was watching the time. Much longer and I was calling 911 as I was here by myself with him.

There have been some other recent episodes of confusion and being very slowed down that we had been chalking up to the brain fog, but maybe it is something else.....

My son (15) has been having some strange episodes. Along with his POTS he has what looks like Myoclonic Jerks. They are so strong and sudden he has banged his head on walls (gotten a huge bump from that) bruises on his hands and legs from hitting tables, etc... Usually they are individual jerks, sometimes he may have several in a row, sometimes he says he can't get his breath and makes a vocal sound when it happens. Sometimes it is just a leg or arm, sometimes both arms and sometimes his whole body. Lately it seems like he will see black spots first then have them.

Earlier today he was sitting at the computer and he had a really bad episode where where it seemed his body was contracting and jerking and it wouldn't stop. I was right there and was able to have him get on the floor. He said it was different, stronger than any before. His eyes were really wide and I could see he was panicked and he couldn't breathe (he was making the vocal sound). He could breathe inbetween, hard to describe. This went on for several minutes would stop then another one. In between he was really, really exhausted, too. I just sat behind him holding him. I was getting ready to call 911 then they subsided. The whole thing was probably 15 minutes till he was able to get back up. All day he has been having extra trouble looking outside (it is bright and sunny) and he gets spots but hasn't had any more episodes.

I would take him to the Dr. but another one of those things that he is fine when he gets there. He had an EEG in November and it was negative, though I understand people can sometimes get several negative EEG's before they get a positive. Does this sound like a siezure or a POTS symptom?

Thanks!

I just thought I would update how it is going for my son on Mestinon. It actually seems to be working pretty good. His stamina is better, his heart rate is seems better, too. But, we have seen ups and downs in the past, and he has had a couple pretty big crashes this week, also. But in between he has also been spending more time with friends, exercised and accomplished some homework, too. Some jitteriness and stomachaches, but he has had those before, too. Need more time but am a little hopeful.

Yes, he loves pickles and the jerky will be good but he has braces but maybe meat sticks (though I try to avoid the nitrites and nitrates. He had me warm the v8 and thought it was much better with his grilled cheese. Thanks!

Thanks for the reply. Yes, I should say he has had a terrible time with brain fog the last couple of months. He hasn't been in school and only does a fraction of the required work so he is so far behind. Anyway, I do suspect that it is probably not the medicine and I don't even know if the medicine is responsible for his good day. He is often like a rubberband and will swing really far one way having more energy and elevated mood than usual then swing the other way and get weak and sometimes unusually agitated and short tempered (all the while saying I don't know why I am acting like this!)

My son just started Mestinon. He took it last night and this morning. He was feeling quite good and spent today with friends, homework and video games. Nothing too stenuous. This is all really good.

On the drive home he asked if his aunt had sent his birthday (meant Christmas) present and I said no. A minute later he asked if his aunt had sent his birthday (same error, meant Christmas) present. I said no. A couple minutes later I told him to bring in the grocery bag with Ramon Noodle soup. He said could I make him some right away and I said yes, then he turned and shut the door leaving the bag. I said, hey you forgot the bag of Ramon Noodles and he said, oh, then as he was picking it up said, can you make me some right away? I said yes, did you know you just asked me that? he said No! but his friend had commented that he was repeating himself a lot today?

It was strange and both times he asked the question the second time exactly like he asked it the first time. Should I be concerned? Is this the Mestinon or more of the same brain fog (which he has had pretty bad)? Mestinon doesn't list this as a main side effect but maybe it is but not too common?

I really hope this works out because he seems to be having a great day and I just hope he isn't going to crash too badly.

Well, he is sure getting sick of salt, salt, salt already. He is a teen and the nature of the beast is oppositional Just kidding for the most part, he is a sweet agreeable kid, except for the anxiety mood swings - then look out! But he has never liked salty foods, or chips, popcorn, that kind of thing. He did find out he can take pretzels, he will chug a v8 (for now), the Ramon Noodles are a good idea.

I will try to get some of the tabs and just see how they work for him.

Thanks!

I give my son Thermotabs. Both his specialists like this method. He takes 6 Thermotabs a day. They are buffered so they aren't hard on the stomach. He isn't supposed to take them after 3 pm though. They are pretty cheap as well, I get them at Walgreens.

Christy, I had read salt tablets might be bad because it diverts fluid in the body to the stomach. Are these tabs a smaller size maybe and does he take them with food?

This just seems impossible. I really need suggestions on how to get all this in for my son? Dr. said 5 to six grams. I measured out 2 tsp of kosher salt which should be about 4 grams. That is a lot. I have been adding it to plain water, vitamin water zero's, OJ. Some works, some not so much.

I am hearing that the waiting time for Dr. Grubb is about a year? How long did you wait to see him?

Robin,

The first Dr. we saw apparently did not have all the information before we went, but my son's pediatrician said she wrote a 2 page referral letter. Dr. Renaud said she didn't see it so my best guess is she didn't read it or it didn't get entered in the computer and she didn't see it. I know how Mayo works and they will often order tests before you come because they are used to people traveling long distances. I thought it was strange no tests had been ordered and tried to call to find out about that at *least* 3 times and always blockaded by the nice appt. person (and I mean that sincerely but I could never get past them). So, if they do not order a lot of tests before you come, I would talk to your own Dr. and have them contact the Dr. at Mayo and ask about it. (I couldn't do that because our own Dr. was on leave because of back surgery - you see, the whole thing wasn't right from the get go for us).

Also, if they do have tests ordered, find out if your daughter should stop taking any medications or OTC medications like benedryl for example, before you come.

There is a Ronald McDonald house. We stayed at the Staybridge Suites which was not outrageous and provided a separate room with beds so my son could rest and free underground parking.

They have a great transport system to the hotels for Mayo patients so you never have to worry about taking your car and finding parking around the clinic. We never took our van.

Hope this helps. Feel free to ask anything else. I hope you hear soon, and as I said if you get in with the pediatric Autonomic Dr. then I think your experience will be way better than ours.

Christy, I just replied through the email so apparently it is in cyberspace somewhere. I will reply through the site here.

Oh, and the length of the test was 10 minutes. Christy, I sent you a reply a couple days ago,did you get it? I'm on mobile now, and can't seem to access the private messages till I get home tonight.